Moved to new retirement flat - now exhausted due to PEM

mermaid

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I have been chronicling my move with ME here over the past months, with long gaps in between. It was lucky that I had a 6 week break with my sister in law and her husband not too far from where I have moved to, as at the time I was already suffering from exhaustion/PEM, and to have come straight here might have finished me off.

I honestly don't know how I could have done it better - moving alone, with little support, but this break in the middle was wonderful. They were kind and supportive, and brought me up to my new flat (Greater London) by car - only about an hour from Brighton and Hove on the coast of Sussex where I was in fact brought up.

I have been here 12 days and there are still many boxes to unpack, but I am getting there. The removal company were not great, but that's another story.

On the plus side it's a pleasant flat and not too noisy if my door to the garden is kept shut. I am lucky so far with little noise from above (some distant buzz of the TV sometimes) and the one neighbour one side. Not so good is that the flat is nearer to a main road than I realised (I didn't actually see the flat before buying it as too far to travel), and I am used to a much quieter environment. It's not too bad with the door shut though, and I don't hear much in my bedroom so no sleep disturbance.

The bus stops are very close, and I hope to be able to use my Freedom Pass to get to the parks here nearby. The other residents seem mostly friendly, but they are generally older than I am and most come from this area and so have friends locally. It's quite challenging to come to a new place to start again at the age of 70.

My biggest worry at present is the possible battle I face with my thyroid med being stopped or challenged (Liothyronine/T3) - it's hard enough to get a small dose of it with T4, but I have been on T3 monotherapy for 9 years. Local endocrinologists I have discovered do not approve of it - at all! Currently I get it for free, on the NHS, but I suspect I will end up self supplying while I am going through this. I have a pharmacy review tomorrow on the phone, so no doubt I will hear the worst soon....
 

Judee

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Can you contact the compounding pharmacies around you and see if they can give you the names of doctors who tend to prescribe T3 monotherapy or even T3/NDT (natural dessicated thyroid) formulas more often maybe.

Perhaps you could find one who understands what you need and does virtual visits instead of office visits.

Anyway, just a thought. Hope you can still get it. My fear would be If they take you off it suddenly, I wonder if you would have some type of thyroid crisis since your body has become dependent on it.

Saying a prayer for you.

I'm so relieved you were able to get the move completed though sorry you're in a PEM crash now. Running a box fan can sometimes help to cancel out street noises.
 

BrightCandle

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I have a pharmacy review tomorrow on the phone, so no doubt I will hear the worst soon....
I was worried about this recently when I moved as the moment I ordered my drugs through the online pharmacy I got called up for a review. I have certainly had problems in the past with this drug and doctors but it just turned out to be a chat about the drug and why I used it and anything else that was wrong since they hadn't received my medical records from the prior surgery yet. My prior GP was a complete pain in the arse and their final act was to refuse to send the medical records on, so I provided my copy of them up to the point I had them but it wasn't necessary and they happily added my drug to my record. It may be boring beuracracy or just an excuse by the local doctor to have a chat about you since you are new, I wouldn't suffer them yanking drugs until it actually happens.
 

lenora

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Hello Mermaid....Welcome to your new home! Certainly things can take time to adjust to, no question of that and I shudder to think of moving myself, if ever necessary.

Earplugs (foam, purple ones) that you twist and then let expand in your ear are a great thing to have for almost any noise problem. True, they'll take getting used to (and they do), but you'll get the hang of them. I've left mine in for a whole day when using them (and hubby was out of town). Just forgot they were in....heavenly, I didn't hear the phone ring or my burglar alarm going off. Not good in the end though, apparently the thing had been going off all night and concerned neighbors finally rushed to my door, but of course i couldn't hear them. I'm sure others also have plenty of suggestions.

Yes, it is hard to start over again in older age. I'm 75 and friends are "departing" constantly. It's very unlikely that I'll make new friends at this age.

You're quite right, if people are from the same area, they've already formed friendships. When you're up to (take a long rest), perhaps something bought at a bakery and taken to your neighbor may help. I don't have any ideas....anyone else?

I'm sorry that the movers weren't great and that you didn't have more family help with the big move. Very nice of your relatives and I'm glad that you enjoyed your stay. Will they be able to visit, or is it too far away?

My youngest daughter and her family are presently renting a place in Chelsea at the moment. We expect them to arrive here on Friday for a few days, before returning to CA. It will be great to see them and we always enjoy having them around. I just disappear for a time if it all becomes too much, you know the feeling. Wishing you well as you learn the ropes of your new life. Take your time. Yours, Lenora
 
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Second star to the right ...
I have been on T3 monotherapy for 9 years. Local endocrinologists I have discovered do not approve of it
I was put on Cytomel monotherapy out the gate, and my then-Dr (one of the few that I liked and truly respected) explained that of all the treatments for low thyroid function, liothyronine was the only one that interfered the least with whatever natural function your thyroid can manage.


Down the road, my new then-Dr forced me off of it, put me on Synthroid in spite of my requests for at least NDT, and it was downhill all the way from there.

My theory is jaded ... Synthroid wants to own the market, and they're willing to pay their salesmen well to get them there.

At least the worst, move-wise (and I dont know how you did it, with or without a break in the middle ... you and @Haley just awe me), is over now, and if I read you post right, your supportive sister-in-law and brother are only an hour away, so maybe some continued support from that area will smooth the road even more ....
 

brenda

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I heard that chicken necks contain some hormones so use them for stock. Don't know whether it works or not.

I saw a sheltered housing flat and met the residents today. I was impressed at how friendly they were. It is in my home town and I was nearly crying a the thought that I could go back if I want to as the warden has just about offered the flat to me and two women are very keen for me to move in. One begged me lol!

There is help available and company when you want it with communal areas. Most of t he cost is borne by housing benefit but I have to find £14 per week. Am absolutely torn about it and scared with the work necessary. Good luck!
 

mermaid

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Can you contact the compounding pharmacies around you and see if they can give you the names of doctors who tend to prescribe T3 monotherapy or even T3/NDT (natural dessicated thyroid) formulas more often maybe.

Perhaps you could find one who understands what you need and does virtual visits instead of office visits.

Anyway, just a thought. Hope you can still get it. My fear would be If they take you off it suddenly, I wonder if you would have some type of thyroid crisis since your body has become dependent on it.

Saying a prayer for you.

I'm so relieved you were able to get the move completed though sorry you're in a PEM crash now. Running a box fan can sometimes help to cancel out street noises.
@Judee Thank you for your prayer Judee. Something worked at any rate, as the pharmacist at review just said that they didn't want my health to suffer with any changes, and though the T3 is dearer than the standard T4, he had looked through my notes and realised how long I had been on it, and was happy for me to continue on T3 and not go off to see the unfriendly endocrinologists.

I don't think we have such things as compounding pharmacies in the UK - it's all very regimented and controlled by the NHS which is becoming a sinking ship as it's being starved of the funds it needs. I made sure I had plenty of T3 in before I moved, and also bought some from abroad from a trusted source in case I ran out, for fear of suddenly being left without. I had to pay for that of course, whereas I get my usual NHS T3 for nothing.

On the not so good side, the brand of T3 that I have used for 9 years has apparently disappeared as Mercury Pharma have gone into administration I have heard (or whoever took over from them). The UK Govt took them to court to fine them for the huge profits they were making out of the NHS and won the case. At any rate the T3 I was using is now not available it seems and I am being offered TEVA which I don't think is as effective. If I have to, I will just need to give it another try though if there is no alternative at present. Maybe need to take a little extra....

My PEM crash that I thought would take days to recover from, eased a bit by the end of last week, as I stopped pushing myself so much. I was even able to go on a day trip to the sea (Brighton) organised by the retirement flats manager, and met up with an old school friend for lunch, as I was brought up there. It gave me such a lift and I spent most of the time resting and eating.

I seem to be adapting a bit to the road noise thankfully and have a fan on against the heat right now, which as you say does mask the noise. It's been 30 degrees today, so very hot indeed.
 
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lenora

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I'm glad you're settling in well.

Yes, it's difficult when changes in meds are made and adjusting doses is required. Not all meds (especially generics) are equal.

Our daughter and her family are just staying here until Tuesday, but London was the last stop on their recent tour of a few European cities. Since she used to live in London, she knew where to take the rest of the family.
All were wearing jackets in London....super hot here, so I understand. Everyone seems to have a different body temperature. They'll be leaving for home (San Francisco) and it will be really cool there, it generally is. Lots of what they call micro-climates. Actually, they live just slightly north of the city, and it's even cooler there.

All were impressed with London and enjoyed the last of the decorations for the Queen's celebrations.

Was Brighton crowded, or aren't the kids out of school just yet? Well, yes they are...it's July after all. How nice that you met an old friend for lunch. I've also kept in close contact with my friends from childhood...nice to have someone that also knew your family, isn't it?

Who knows, perhaps you'll end up moving to where you were born. It happens. I'm glad that you're feeling better, took the trip and met your friend. Now she'll have to visit you. Yours, Lenora.
 

mermaid

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I was worried about this recently when I moved as the moment I ordered my drugs through the online pharmacy I got called up for a review. I have certainly had problems in the past with this drug and doctors but it just turned out to be a chat about the drug and why I used it and anything else that was wrong since they hadn't received my medical records from the prior surgery yet. My prior GP was a complete pain in the arse and their final act was to refuse to send the medical records on, so I provided my copy of them up to the point I had them but it wasn't necessary and they happily added my drug to my record. It may be boring beuracracy or just an excuse by the local doctor to have a chat about you since you are new, I wouldn't suffer them yanking drugs until it actually happens.
Well I think you were right in some respects @BrightCandle that to some extent it was boring bureaucracy. But that said, I was maybe lucky that my GP did send on my notes and the whole thing was turned over to the pharmacist (maybe there was a private discussion with the GP also though he didn't mention that!), as he said he had read my notes and it was decided that I could hold onto my T3. My previous GP had kindly written a letter saying I was stable on it, (letter from her requested before I moved) and I think my background work also helped as I found the one GP practice in the whole of Wallington that did actually prescribe T3 before I signed up there.

I am not sure if you are in the UK Bright Candle? The situation with GPs is so dire now that they don't want to see anyone unless they have to, so there was no invitation to come in and have any kind of in person chat - even with the pharmacist it was done on the phone.
 

BrightCandle

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I am not sure if you are in the UK Bright Candle? The situation with GPs is so dire now that they don't want to see anyone unless they have to, so there was no invitation to come in and have any kind of in person chat - even with the pharmacist it was done on the phone.
Yep its in a dire situation. I had been trying to get some tests for my bruised eye sockets but I worked it out myself this week. GPs have been useless my entire life its not a new thing they have never once got a diagnosis right and have regularly got drug doses wrong. The NHS is just a complete mess and has been my entire life at this point. Its not that I want the US system but it sure does need some changes throughout the system.

Glad to hear things worked out, its a boring dystopia the world we live in.
 

mermaid

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I'm glad you're settling in well.

Yes, it's difficult when changes in meds are made and adjusting doses is required. Not all meds (especially generics) are equal.

Our daughter and her family are just staying here until Tuesday, but London was the last stop on their recent tour of a few European cities. Since she used to live in London, she knew where to take the rest of the family.
All were wearing jackets in London....super hot here, so I understand. Everyone seems to have a different body temperature. They'll be leaving for home (San Francisco) and it will be really cool there, it generally is. Lots of what they call micro-climates. Actually, they live just slightly north of the city, and it's even cooler there.

All were impressed with London and enjoyed the last of the decorations for the Queen's celebrations.

Was Brighton crowded, or aren't the kids out of school just yet? Well, yes they are...it's July after all. How nice that you met an old friend for lunch. I've also kept in close contact with my friends from childhood...nice to have someone that also knew your family, isn't it?

Who knows, perhaps you'll end up moving to where you were born. It happens. I'm glad that you're feeling better, took the trip and met your friend. Now she'll have to visit you. Yours, Lenora.
Thank you @lenora for both of your messages. I was about to reply to you, but dinner got in the way!

I had to smile at your story of your brilliant ear plugs and how you couldn't hear a thing!! I will bear that in mind if the noise outside gets too stressful. I think it kind of took me by surprise as the main road is around a corner, so not really close, and I could hear this kind of dull boomy noise which I thought was one of those sound systems in cars, but it kept coming and going. It took a day for it to dawn on me that it was in fact the sound of car tyres I could hear going round. I could hear it worst if I kept my garden door open - an odd kind of acoustic maybe bouncing off the buildings here. If I shut the door and open my kitchen window it's not so noticeable thankfully though with the increased heat and no breeze, I do need the door open now.

How funny that your daughter and family have just been in London then! I am so glad that they had a good time there. I have just today received what is called a Freedom Pass which means I will get free train/bus/tube travel in the whole of the London area. It's very handy as I am in fact right on the edge of London, but if/when I have the energy and inclination, I can arrange to meet people there and we can go somewhere, though how I will find my way around I am not sure! My sense of direction is not great and I find Google maps still a bit baffling.

Actually the children haven't quite broken up yet from school so it was a good time to go to Brighton. I think maybe they break up next week.

Much as I would enjoy living in the Brighton area, I think it's unlikely that I would move again. Selling the house and coming here was a huge upheaval, and I don't think I could do it again. Also although I do have family down that way (it's Hove next to Brighton where I stayed and where I was brought up), it's really by marriage, as apart from my brother who is in a nearby town, there is no one else left (and I don't have a great relationship with him!). I like my sister in law very much, and she has lots of family down that way, but I couldn't ask them to help me out, in the same way my son helped me to move (and sister in law is older than me, so she's beginning to struggle physically too).

I think I may be able to see more old friends now I have moved here, and my only granddaughter is hoping to come for a visit later in the year too. She is 20 this year.
 

mermaid

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I was put on Cytomel monotherapy out the gate, and my then-Dr (one of the few that I liked and truly respected) explained that of all the treatments for low thyroid function, liothyronine was the only one that interfered the least with whatever natural function your thyroid can manage.

Down the road, my new then-Dr forced me off of it, put me on Synthroid in spite of my requests for at least NDT, and it was downhill all the way from there.

My theory is jaded ... Synthroid wants to own the market, and they're willing to pay their salesmen well to get them there.

At least the worst, move-wise (and I dont know how you did it, with or without a break in the middle ... you and @Haley just awe me), is over now, and if I read you post right, your supportive sister-in-law and brother are only an hour away, so maybe some continued support from that area will smooth the road even more ....
@YippeeKi YOW !! Your first Dr sounded great, and what a shame for you that the next Dr forced you off the T3 monotherapy. That's a big change to go from T3 monotherapy to T4 monotherapy. As you say... downhill. So sorry. Yes, Synthroid (or Levothyroxine as they call it here in the UK), has been effectively pushed by a whole host of salespeople, and not enough profit for them in NDT I guess?

No, I don't know how I did the move either, and I found the stress affected my ME and made things worse. I hope to invite my sister in law and brother in law (relatives by marriage) up here again when I am a bit straighter as it's only an hour or so to get here. Hopefully my son and his wife will do a bit more when they get back from their hols (they are going to get the shelves up for me for definite and that will sort out the contents of a lot of boxes of books!).
 

mermaid

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Yep its in a dire situation. I had been trying to get some tests for my bruised eye sockets but I worked it out myself this week. GPs have been useless my entire life its not a new thing they have never once got a diagnosis right and have regularly got drug doses wrong. The NHS is just a complete mess and has been my entire life at this point. Its not that I want the US system but it sure does need some changes throughout the system.

Glad to hear things worked out, its a boring dystopia the world we live in.
Yes, I tend to agree with you @BrightCandle about much of what you say. Most of the conditions that I now have, have had no attention or help from the NHS and I have just had to try things out for myself with mixed results.

That said, I do owe my sight to the NHS and thankfully they got that right for me, as eye surgery was a bit beyond me - 3 emergency eye ops (2 detached retinas same eye, and a macular hole other eye,), plus 2 cataract ops which come fast when you have the other ops - in the space of 10 years. If they hadn't got them right, and if this was 40 odd years ago, I would be effectively blind. Mind you one of the consultants traumatised me in the last op by his attitude but I have done my best to forget that!

Working out how to treat bruised eye sockets sounds like advanced stuff to me.
 

mermaid

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I heard that chicken necks contain some hormones so use them for stock. Don't know whether it works or not.

I saw a sheltered housing flat and met the residents today. I was impressed at how friendly they were. It is in my home town and I was nearly crying a the thought that I could go back if I want to as the warden has just about offered the flat to me and two women are very keen for me to move in. One begged me lol!

There is help available and company when you want it with communal areas. Most of t he cost is borne by housing benefit but I have to find £14 per week. Am absolutely torn about it and scared with the work necessary. Good luck!
Interesting re the chicken necks. I did not know that... happily I now have my T3 OK if not the usual one....

I can understand how tempted you must be re the sheltered flat, and especially if it's in your home town! Any move is a disruption and means energy taken, but sometimes you have to look at the bigger picture and the future. It sounds similar to my own sheltered accommodation - not sure how much I have in common with people here, but they are really friendly and that counts for a huge amount.

Thinking of you as you consider it.....is it far to travel from where you are now?
 

Booble

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>>>That said, I do owe my sight to the NHS and thankfully they got that right for me, as eye surgery was a bit beyond me - 3 emergency eye ops (2 detached retinas same eye, and a macular hole other eye,), plus 2 cataract ops which come fast when you have the other ops - in the space of 10 years. <<<

Out of curiosity as an American, how much did it cost you via the NHS for having 3 emergency eye operations and 2 cataract surgeries?
 

BrightCandle

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Out of curiosity as an American, how much did it cost you via the NHS for having 3 emergency eye operations and 2 cataract surgeries?
With the NHS we pay for prescriptions to the tune of ~£9 per script (although we can pay ~£100 a year for all of them) and maybe we have to buy some equipment sometimes, but operations are not charged and neither are appointments. We pay via taxation collectively in the sense that everyone pays 11% National Insurance tax past a certain earning threshold and in total the NHS costs £176 billion a year out of the ~£1200 billion national budget but for the patient directly there is no cost.

Even privately operations are a lot cheaper. I have had a couple of private operations and they were both about £2000, an MRI of my lower spine was about £250. So even the private cost is a lot closer to the actual cost than the ludicrous prices charged in the USA.